Apr 13, 2014 - 11:10 pm
I am new and never knew this board existed. I tried calling other networks years ago trying to locate someone with a like experience to talk to. I guess I just didn't try hard enough. As my subject says I have been cancer free for over 4 years now. I had a very small squamous cell carcinoma on my right cheek near my nose which went undetected and then finally Mohs surgery. The cancer had invaded my trigeminal nerve and the doctor who performed the Mohs chose not to send me to an oncologist or order an MRI. I was ignorant and continued to see the same doctor. Shame on me. Anyway, several months down the road the perinueral invasion was recurrent and resulted in a surgery that required the lower eye socket to be removed as well as part of my cheek and jaw bones. Several teeth were pulled as well. The surgery and reconstuction took over 9 hours. Titanium mesh was used to rebuild the eye socket and cheek bone and a tendon was rotated from my head to my cheek. The margin was clear only at the brain stem. Obviously I am extremely fortunate to be writing this. I am also very fortunate that the cancer has not returned locally or in any other organ. The surgery was follow by 30 radiation treatments to the facial area, the brain, the brain stem and several other glands as well as the optic nerve. A few minor surgeries were necesarry over the next couple of years for my eye to function well and a sinuplasty to help me breath. I also had a tube in my ear for a couple of years or so. I am now using a nasal nebulizer with vancomycin and levequin to keep the sinus infections at bay. I have never recovered my energy or a sustained health for any length of time. I am posting to see if there is anyone out there who has experienced something similar and still lacks normal ability to function although they are cancer free and not undergoing any further radiation or chemo. I am female and 61. i was 56 and fairly active when the first surgery occurred. I had to retire (teaching) as i could not stay well long enough to maintain the job. I try to eat well and get some light exercise. I have gained back to a healthy weight and have no trouble keeping it on. As a matter of fact, I wouldn't mind getting the last 5 pounds off! My face is lopsided and I try to just be grateful that I have a face but sometimes I fail. The trauma causes mild to bothersome discomfort which is a constant reminder that I am not the same as I was. i would really appreciate any suggestions that might be beneficial. Also, I will keep reading this board and allow it to be a reminder of what is important and again of just how fortunate I am. I will also keep the other posters in my prayers. Thanks for listening (reading).